On 9 May 2022 Rare Diseases Organization Nepal held its inaugural meeting. The local doctors participating discussed individual cases of patients with rare diseases and the steps to be taken to improve the standard of care for patients in Nepal with rare diseases, in terms of diagnosis, care and counselling, and the socio-economic status of the rare disease communities in Nepal.

Rare Diseases Organization Nepal is the only umbrella organisation dedicated to improving the standard of care for all rare disease patients in Nepal. It aims to support accurate diagnosis, accelerate treatments and provide proper guidance to patients and families. It believes these are crucial for individuals with rare diseases, who should have the right to live their lives to their full potential. 

As it looks to the future, Rare Diseases Organization Nepal would like to develop international links with other organisations for rare diseases.

Mission

• promoting the well-being of people suffering from rare diseases and the well-being of its members
• developing activities that support patients with rare diseases: diagnosis, counselling and spreading awareness in all parts of Nepal
• promoting scientific research on rare diseases, their causes and treatments.

Vision

1.) Providing medical and psychosocial support for people with rare diseases and their families to improve the quality of their lives.

2.) We offer support to patients and their families from all over Nepal in both the medical and psychosocial fields (holistic approach). 

3.) We encourage patients to be as self-reliant as possible, to have direct control over their own lives and to be able to participate in society. 

4.) By carrying out genetic research into the cause of rare diseases, we hope to be able to treat them eventually. 

5.) We believe contact with others who suffer from rare diseases is crucial for patients and their families. It is an opportunity to exchange knowledge and experiences and help each other.

6.) Providing information is essential, and all information must be up-to-date. 

7.) Advocacy and cooperation are required, particularly with other stakeholders in the rare diseases area. 

8.) Not having a correct medical diagnosis can be a psychologically heavy burden for the patient and their family. It is therefore important that a medical diagnosis is not only quick but accurate. 

9.) A rare condition is almost always chronic, which means that a patient will have to manage it their whole life. This means that the patient may experience obstacles in areas such as school and study, dealing with friends, leisure and work.

Values

1.) We represent the interests of patients and their families. 

2.)  We have a team of medical professionals at our disposal who are experts in their field. 

3.) We can give emotional support to the patient and their family based on our own knowledge and experience. 

4.) Impact and range: we want to have a positive impact on the quality of life of the patient and their family. 

5.) We use modern technology and adopt a modern approach. 

6.) We work together with all kinds of organisations and individuals to achieve our goals.

Main objectives

We have set the following main objectives for the duration of the policy plan:

1.) Our organisation supports patients, their families and care professionals on both medical and psychosocial levels. We want a positive impact on the lives of people with rare diseases.

2.) To unravel the genetic cause of rare diseases and to enable treatment of the conditions. 

3.) To ensure medical diagnosis is accurate and as swift as possible. 

4.) To bring patients, their families and care professionals together. 

5.) To collaborate with other organisations, emphasising the concept of ‘together we are stronger’. We wish for a ‘win-win’ situation for all parties involved and for our joint collaboration to be positive. It is vitally important that all organisations demonstrate mutual respect in terms of professionalism, ambitions and activity.

Contact: nirmalkhadka_24@yahoo.com

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